Howe seems able to make only one tiny movement: opening her left eye wide. But that ability is why her oldest daughter, Carol Howe, adamantly believes that doctors should keep her mother alive on the ventilator that has acted as her lungs for the past four years.
Barbara told her daughter many times that she wants aggressive medical care as long as she appreciates her family and shows any sign of brain function. And when Carol walks into the room on the 21st floor and says hello, she sees her mother's left eye widen in recognition.
But in an unusual and painful disagreement, doctors at New England's largest hospital want to withdraw artificial life support, while still providing nursing care and pain medication, and "let nature take its course," said Dr. Britain W. Nicholson, Mass. General's chief medical officer. They agree that she requested aggressive treatment, but say she no longer appreciates her family.
Mass. General doctors have taken the rare step of going to court to try to overturn Carol Howe's wishes as her mother's health care proxy, a case that could influence the outcome of future disputes between doctors and families.
The case also highlights the debate about how much care is appropriate for terminally ill patients. In one article in the Journal of the American Medical Association three years ago, 48 percent of all patients surveyed wanted all available treatments, no matter what the chance of recovery, while only 7 percent of physicians rated this as important.
But even so, 64 percent of patients did not want to be connected to machines. In another study, patients were less likely to want aggressive measures the more they knew about them. Patients also felt it was important to be mentally aware and be at peace with God.
Barbara Howe's situation -- she has been in the hospital for four years with Lou Gehrig's disease -- has been the cause of emotional upheaval among some staff. Barbara's physician, Dr. Andrew Billings, asked to be removed from her case because he disagrees so strongly with her aggressive care and because he believes she may be in pain, according to court documents.
The head of the hospital's end-of-life committee, Dr. Edwin Cassem, a Jesuit priest and psychiatrist, wrote in a June 6 report that "the patient's status has surpassed an acceptable limit endangering her integrity, dignity, humanity, and basic human rights."
According to a sworn statement filed in court, one of Barbara's nurses, Janice Cameron-Calef, refused to participate in the surgical removal of her patient's right eye when it ruptured, because she found it a "disgrace to have to do this to such a heroic woman."
Carol Howe said she's trying to carry out the wishes of a woman who nurses call a "war horse" because of her lifelong insistence on medical procedures regardless of the pain. Howe said she will continue trying do so unless she believes that her mother is in constant discomfort or she loses sight in her left eye.
"I'm advocating for what she told me she wants, and they're coming into this late in the game trying to tell me what she would want," she said.
Complicating the situation is that Blue Cross & Blue Shield of Massachusetts told the hospital in March that it would stop paying for Barbara Howe's care on June 21. The state's largest insurer said that the patient is no longer receiving medical care, but rather is getting custodial care, services to a patient who is unlikely to improve. Custodial care is not covered under Barbara Howe's policy, leaving the hospital to cover the cost of her treatment, at least $1,000 to $2,000 a day.
Mass. General executives said it was Barbara's eye surgery in June, not Blue Cross's action, that prompted them to go to court on June 18.
But Carol Howe's lawyer, Gary Zalkin, said, "The timing is very interesting."
Judge John M. Smoot of Suffolk County Probate and Family Court set a trial for Feb. 9, 2004.
Charles Baron, a law professor at Boston College who pushed for passage of the state's health care proxy law, said the Howe case is unusual and could influence how hospitals, doctors, and families handle complicated end-of-life medical care when a patient can't speak for him or herself.
Baron said he knows of just seven cases in which a US hospital tried to overturn a family member as health care proxy, a person the patient chooses to make health care decisions if he or she becomes unable to do so.
In one highly publicized case in Minnesota, a county court judge ruled in 1991 that doctors could not disconnect Helga Wanglie's life support because her husband wanted her kept alive. The 87-year-old former school teacher died three days after the court ruling.
Judges ruled in favor of hospitals in three of the cases and in favor of the family in four, Baron said.
But he said he believes that hospitals will go to court more often to remove patients from life support, "as health care becomes more of a scarce commodity and [as] doctors adopt a more philosophical attitude toward death and are more comfortable with decisions to take people off life support."
"Years ago, it was more common for doctors to be unwilling to give up on terminally ill patients, as if they were conducting a personal battle against death," he said.
Carol Howe said that she and her mother prepared for Barbara Howe's death, talking often and in detail.
Carol describes her family as traditional Irish Catholic. Her father was a Boston policeman; her parents raised their daughters in the same two-family Dorchester house where Barbara grew up. Barbara's sister, Catherine, lived upstairs.
Barbara was thin, known as a fast walker, and she took the MBTA Red Line downtown almost daily to shop, getting home in time to cook a meat-and-potatoes dinner.
Carol, who worked as an office manager in Mass. General's neurosurgery department from 1978 to 1988, took her mother to Dr. Robert Brown, a Mass. General neurologist in 1991. She had noticed that her mother had lost control of her left foot.
Brown suspected amyotrophic lateral sclerosis, or ALS. It's a neurological disease, more commonly known as Lou Gehrig's disease, that attacks nerve cells in the brain and spinal cord until patients are completely paralyzed. In most cases, their minds remain sharp.
Over the next seven years, Barbara's health deteriorated, but she was determined not to let on how much. She often abandoned her wheelchair down the hall and walked into Brown's office so he wouldn't know.
During the late 1990s, Carol said that she and her mother talked many times about her medical care. Long before that, in 1988, her mother was appalled when her 5-year-old grandniece was taken off life support after she was hit by a car, even though she was in a coma. "She has told me, `When it's your time, God takes you,' " Carol said.
By 1998, Barbara's health had worsened to the point that she named her daughter her health care proxy, partly because of Carol's take-charge personality, directness, and comfort discussing the frightening details of her terminal illness.
Eventually, Barbara's lungs gave out, and she ended up in Mass. General in November 1999 as a patient in the Palliative Care Service headed by Billings. She's been there ever since.
Carol's dispute with Mass. General began 1 1/2 years later, in April 2001, when Billings sent her a letter saying he was going to turn off Barbara's ventilator because he believed that she might be suffering needlessly and because she could no longer communicate meaningfully with her family.
Carol filed for a restraining order, but dropped it when the hospital agreed to treat her mother if she developed a serious infection or other complications. In return, Carol agreed that they should not provide CPR if she lost her pulse, she said.
During a meeting of the end-of-life committee the following October, Brown, the neurologist, said he disagreed with Billings that Barbara was "clearly cognitively impaired," according to court records.
Because she was "locked in," he said, he couldn't determine Barbara's level of brain function. "We must accept the ambiguity about her level of cognition and proceed with decisions," he said. Most families, he told the committee, withdraw life support.
Meantime, Carol was also serving as health care proxy for her father. He had colon cancer and was admitted to Mass. General in 2001 on the floor below her mother. He too wanted aggressive medical care, but was unable to talk clearly and was in such severe pain that Carol told doctors no. He died on June 29, 2001.
Carol's involvement in her mother's care is intense and extends well beyond making decisions. She visits Barbara three to four times a week for six or seven hours at a stretch, washing and coloring her hair strawberry blond, suctioning secretions from her lungs, and heating bottles of liquid nutrients in a microwave before pumping it into Barbara's stomach through a plastic tube.
Her sisters visit too, but Carol is the most involved in the nitty-gritty care. She said that she no longer gets sad, but just gets lost in the tasks at hand.
Carol said she believes her mother hears everything she says. "I'm going to curl your hair tonight," she told her one day last week, rubbing her mother's left cheek.
It's easy to see why Carol believes that Barbara the person is still there, inside a body that has rebelled against her. Upon hearing the voice of a stranger, Barbara looks as if she's going to cry and pulls her lips back into a pained frown.
The hospital revived its plea to take Barbara off life support in June, when it filed its petition with the court.
The hospital would not allow the Globe to talk with the doctors and nurses who care for Barbara.
But Nicholson said the hospital went to court because doctors had to remove Barbara's ruptured right eye, an extremely painful condition if left untreated. They fear that her left eye may also rupture, because she can no longer blink to lubricate it, he said. The eye is taped shut unless her family is visiting, leaving her even more locked inside her body.
Carol said she will reconsider her position if her mother loses her left eye.
The state's health care proxy law allows hospitals and doctors to ignore a proxy's wishes if they can prove the wishes are contrary to responsible medical practice or if doctors believe the wishes are unethical. But in that case, the patient must be transferred to another hospital.
Mass. General lawyer Robert Hamel said that the hospital is arguing both points, as well as contending that continuing aggressive care violates Barbara Howe's wishes.
That is the key question, said Baron of Boston College. "On the one hand, what's it like to be stuck on a damn machine and unable to communicate with people? As well-intentioned as her daughter is, she may be torturing her mother. But on the other hand, the values of the doctors and nurses can't be forced on the family." In July, Smoot appointed David Aptaker as Barbara's lawyer, and he will spend the fall trying to determine whether his client would want aggressive care at this point in her illness by reviewing medical records and interviewing doctors and family. He also will encourage the two sides to come to an agreement on her care. If they can't, he will inform Smoot of his findings to consider during trial.
Smoot also appointed a guardian ad litem to make a recommendation on Barbara Howe's care. That report is secret, though Aptaker will use it to make his determination.
"In theory, I have one agenda; they have multiple agendas," Aptaker said. "I will do the best I can to preserve her dignity and her right to self-determination. One interesting issue raised by this case is whether it will spur other people to talk to their families about these difficult decisions."
Liz Kowalczyk can be reached at email@example.com.
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